NICU-2-HOME: Using Health IT to Support Parents of NICU Graduates Transitioning to Home

Transitioning to home from a neonatal intensive care unit (NICU) with a very low birth weight (VLBW) infant can be stressful for parents. VLBW infants who are discharged from the NICU have complicated home and outpatient care needs well into the first year of life, including home oxygen and monitoring, gastrostomy tube feeds, and complex medication regimens. These infants have a high rate of morbidity and have frequent re-hospitalizations. Little research has been done on factors that support parents for a successful transition to the home.

This project developed NICU-2-Home, a patient- and caregiver-centered mobile application (“app”), that provides information to parents of VLBW infants as they transition from the NICU to their homes. It is essential for parents of VLBW infants to feel competent in their ability to care for their high-risk infants to be successful in the parenting role. NICU-2-Home aimed to achieve the “four rights” of delivering the right information at the right time to the right person using the right medium.

The specific aims of this project were as follows:

• To design a novel mobile phone application, NICU-2-Home, using qualitative methods that would support both mothers and fathers of VLBW NICU graduates as they transition to home. 
• To implement NICU-2-Home in the NICU and during the transition to home. 
• To conduct a feasibility study with randomization in the NICU to test the ability of NICU-2- Home. 

Qualitative interviews were conducted with parents to identify concerns about providing care to their infant with VLBW. The following four themes emerged: 1) mothers were the primary information seekers, and their preferred information source was parenting Web sites; 2) both parents were concerned with online privacy issues and mistrust in health information found on the Internet; 3) parents looked for people like themselves online; for instance, mothers looked for blogs written by other mothers in the same situation; and 4) choosing a health care provider and scheduling appointments typically fell to the mothers. These findings informed the design of the NICU-2-Home app.

A randomized controlled trial evaluated the effect of the app. At baseline, self-efficacy scores were equal for participants randomized to the NICU-2-Home intervention and the standard of care control group. At followup, the intervention group showed a moderate increase in parental sense of competence, and greater use of the app was associated with improved parental sense of competence, preparedness for discharge, and length of stay. The study team concluded that bolstering parents’ self-efficacy and competence using a mobile phone intervention supported primary caregivers, which may ultimately improve VLBW infant outcomes.